Hi all. Have any of your doctors done a DNA test to determine what pain medication works best for you? My neurologist wants to do one at my appointment on Wed.
I currently take 3 10mg Loratabs per day. It doesn't really improve my ability to do anything, but it does still take the edge off for just a few hours. I literally don't leave my house except for doctor appointments and to go to the pharmacy.
A couple of months ago, he tried me on Kadian, a 24 hour dose of morphine. I had horrible side effects - panic attacks where I hyperventilated and literally felt like I was smothering. So we went back to the 3 Loratabs per day (the max of hydro he will give).
He wanted to do a DNA test to determine what medicine would work for me, but his assistant said my medicare adv plan wouldn't pay for it. Today she left me a message that it will pay for it. My concern is what will happen if it says morphine would work well for me and/or that Loratab won't. I'm not taking morphine under any circumstances. I also won't take methadone due to a side effect my brother had that left his legs almost black, like diabetic legs. After every test by every type of doctor, they determined by elimination that his high dose of methadone did it. Since we share the same allergies (he can't take morphine either), I don't want to try.
One more question - my internist wants to send me to a real Pain Management doctor due to my poor quality of life. My disability is in all 3 areas of my back and due to allergy and osteopenia, I can't take steroids. I don't want to become a test pin cushion for a pain dr. Will they just go by your doctor's request and treat you with smallish doses of pain medication, or do they all want to do nerve blocks, burn your nerves, etc? Thank you guys so much! Sorry this is so long!
p/s My internist is wonderful and she would treat me herself, but the state of TN enacted a new law this year that any doctor who prescribes pain medication to any patient for more than 7 days in year must register as a pain clinic and operate under all their rules which require being set up in their computer system, checking pharmacy records each month, and all the testing things they require of pain management clinics. It makes it impossible for the doctor who knows you best to treat you.
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I have never heard of a DNA test to determine the best pain medicine.
I also have had a bad experience with morphine-I was given too much in the hospital & had a seizure. I will never take it again in any amount! I say I am allergic to it. But I guess if they determine in a DNA test that it is best for you, you can't say that. I would guess with your experience with it, it is going to come out that it is not best for you.
Another point on DNA, my brother and I are very much alike. They tested my him to see if he was a match to be a bone marrow donor for me and he was not. I was really surprised. We look alike and have many of the same allergies, etc. so that doesn't necessarily mean anything.
My internist has been wanting me to switch from taking so much ibuprofen to taking low doses of narcotic pain medicine. He has been very willing to prescribe it but I have been wondering the same thing you mentioned, if he is going to be able to continue to do so.
I have rambled on in some other posts about my reluctance to start on chronic pain medication. My doctor doesn't doesn't act like there is a problem with hm prescribing but I wonder if that will change. We do have KASPER in our state.
Good luck with your DNA test. Let me know how that turns out.
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I have heard of this test and actually just had it done (still waiting on results). A good doctor will use it as guidance, not as a definitive thing. I think it mostly is about metabolizing the med. I don't think it says if you will be able to tolerate it as far as side effects. My pain specialist wanted to see if it will give us any answers for me...I have a very high dose tolerance and burn through the meds quickly (have to dose them more frequently). The only med that works well for me is methadone.
There are many pain meds to try (not sure if this test includes some of the newer ones), so even if it showed methadone or morphine were a good fit, it may show others are too...or they could just be tried anyways.
There are different types of pain specialists. Some do focus more on injections (intervention procedures). A good one will try to combine a variety of treatments and have you try what they think has the best shot of working. If you are going there to consult (not for them to take over your care), then they will probably make a treatment plan suggestion for you and it would ultimately be up to your primary. If you are going there for them to prescribe, then you'd have to discuss it directly with them.
Also, if they do suggest something you aren't comfortable, you are always free to refuse it. However, refusing non-narcotic treatments could affect your ability to receive the pain meds. Thankfully my doctors have never suggested anything I would refuse (like nerve ablation). I've ditched plenty of doctors though that didn't have anything helpful to say, such as those who just said lets take you off the methadone and see what happens! (without any alternate treatment ideas).
Seeing a pain specialist can be a great thing to get your pain under control as they are educated to best treat it. It takes trail & error as with all doctors though, as there are good ones and bad ones. With these new laws there is a shortage of pain docs, so sometimes there aren't many choices.
I'm in WA where we have a new similar law. It took me a few doctors to find a good one, but now I'm doing better than I have in a long time. It takes awhile for a new doctor to get to know you, but it can be worth it. I would support these new laws except that they don't have enough specialists in place.
Doctors without pain management education may turn too early to opiates (as they are trained more in acute pain than chronic), wait too long (afraid to prescribe), not know how to adjust the dose & med properly, not combine therapies, etc. Best wishes.
constant headache since 2006
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SK, thank you for your reply! I'd never heard of the test either, but I researched it and it does seem to exist. I'm sure he'll insist on Wed, so I'll let you guys know the results in case it's the latest/greatest thing doctors start using.
About your reluctance to take prescription pain meds - I've walked in your shoes. After many years of high doses of over the counter meds, my internist asked me if I wanted to end up on dialysis, because that will happen if I didn't cut it out. She encouraged me to take opioid meds and said that unless I misuse them, they are much better for my body than the over the counter stuff. Please don't be scared to make the change. You don't have to start on heavy duty ones. Lortab has helped me for four years and only the past six months or so has it seemed to finally become not so effective.
Don't wait until you've damaged your kidneys, which I did a little bit.
TortoiseGirl, thank you. I hope if my doctor does suggest a change, that she will talk to them first for me. My brother had such bad luck with nerve blocks, etc, that I know it colors my opinion of them. I'll be interested to see what your test shows. That's the way he explained it to me, too, it's about how my body metabolizes certain medications that he wants to see.
About your methadone - two things. 1) Do you need break thru meds with it? Or do people normally? 2) and most importantly, according to my brother's current pain dr, who went to California for a long update in pain education (he was already a Certified Pain Specialist), he said that methadone has to be withdrawn slowly. And by slowly, he meant to do it safely, a year or more. He said that even a year later, withdrawal symptoms can occur. Knowing that, it kind of scares me, though, I'm sure if my doctor insists I try it he will start me off on a really low dose. My brother still has to take a methadone every few days for his doctor to feel safe for him. He has a pain pump now, but he had his wife's good insurance at the time and my doctor told me a medicare adv program would never pay for it. He has dilaudid(sp?) in his pump. He's also had new people at Walgreens tell him "we don't carry that" when he's tried to fill his methadone, so each new employee has to learn that yes they do carry it for him. I guess it has a certain stigma about it that worries me, which is really silly on my part because I know it's for pain and not just illegal drug withdrawals. It has a tendency to make him droopy-headed which I don't want.
Does it help you live a better life? I just want to be able to fold clothes, put sheets on my bed by myself and go to a real grocery store. I buy what I can at the pharmacy and depend on others to do the real shopping for me when they are free to do it.
If I do let her refer me, I hope it doesn't take many tries to get one I'm comfortable with, because like you said, good pain doctors are giving up and going back to regular practice. My neurologist is certified in pain management, but took it off his business cards and only treats his old patients he already had and the rest are normal neurology patients. He's very conservative with his meds, but I can understand why.
Thank you for answering my questions. Let me know on your test and I'll do the same. I hope it gives your doctor good information that helps you!
I did not know about the test but I will ask about it at my next pain management appointment. Lady Vol depending on where you are in our great state would matter, but I do have an excellent pain management doctor, and he does LISTEN. To me that is the most important thing.
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It is not true that your doctor told you medicare advantage plans do not cover intrathecal pain pumps-I have a medicare advantage plan(humana ppo) and it does cover it. I always check for myself, I have learned not to go by what others(doctors too)tell me.
Also I too am curious what tortoise girl's dna study will show regarding pain medications.
constant companion pain
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If you need breakthrough pain meds on other opiates, you probably will on methadone as well. You don't want the dose so high that it covers all your pain, more like 50% of your baseline pain. There is a misconception that breakthrough meds can't be taken with methadone...the deal with this is that over a certain methadone dose, you won't get any euphoric effects from any other opiates you take.
For me it is a life changing med. I tried most of the others and we couldn't find a dose to make me comfortable. It was actually the first long acting med I was put on (although I had extensive history with short acting meds and a high tolerance already). It is typical to have breakthrough pain meds with any long acting pain med, unless your doctor doesn't use them (stupid in my opinion), or your pain is very constant (this is rare).
I have tried most all the breakthrough pain meds and am currently taking hydromorphone with it. I had been on oxycodone for the longest time. I have a much tougher time finding a helpful breakthrough med/dose than with the methadone. As I am so tolerant to it I find I take the breakthrough meds much less often than prescribed, just so it has a chance of working. But doing that, my pain is usually way out of control by that time, so it has less of a chance of working anyways.
Methadone itself is the least likely to have any euphoric effects, and probably a bit less likely to cause nausea. It is probably the most likely of the opiates to be sedating (vs. oxycodone products which are stimulating for some folks).
Especially at first I found myself getting "the nods". I was fine one minute and nodding off the next. It definitely subsided some over time. I also have hypersomnolence though (unexplained excessive sleepiness, mostly in the morning), so am now on Ritalin. Without the methadone I probably wouldn't need it, but who knows...I haven't gotten completely off the long acting meds since starting them 4+ years ago.
It should not take a year to get off of, no matter the dose. Actually, I believe the easiest way to get off methadone is to be switched to another med and taper off that. It is easier to switch off of methadone then to switch to methadone, although you would have a period of time where you have to be in withdrawal before starting the new med, to get the methadone level down some. Although it is sort of self-tapering as it has such a long half life. Its often the very last dose of the medication which is tough to get off of.
Getting off the med isn't so much of a concern for me as my pain was so bad before, and its not expected to subside. Worst case they can admit you to the hospital and give you meds (such as to sedate you and treat the anxiety and stomach issues) while you do a fast taper over a week.
Sometimes its tough to get that sort of treatment however outside an addiction clinic. A good pain doctor will either have experience with this or know a specialist who does. My pain doc actually just referred me to another pain doc to consult with and rule out opiate hyperalgesia.
My opinion is that methadone is a very good pain med for a lot of people, but its probably not good first line med. It has a slightly higher side effect profile / risk. Patients should get an EKG to check for prolonged QT interval (I think once you've tapered up to a theraputic dose). I luckily haven't had any pharmacy issues with it. In fact, it has always been in stock. It only comes in two doses and is cheap, so that is probably why its easier to get (vs. other meds that are long & short acting and various doses and very expensive).
Yes, methadone should be started at a very low dose, such as 5mg once or twice a day, no matter your tolerance. In my opinion you should only be prescribed it by a pain specialist. My primary doctor was the one to first prescribe it (after a neuro's recommendation I be started on some sort of long acting opiate) and I regret it.
Although nothing bad happened, he wasn't as familiar with it (although it sounded like he had other patients on it and it was his first choice opiate). He didn't have me get an EKG, thought I only had to take it once or twice a day (three times a day is common for chronic pain, and I actually need four), etc. Methadone would be taken once a day for addiction.
I know I am probably the exception to be on high doses (especially for my age), but I'm on 120mg/day of methadone, 30mg four times a day. It only comes in 5mg and 10mg tablets, so its 12 pills a day. Annoyingly enough, my doctor gives me two week scripts as he won't go over 200 pills a script (supposedly as it could attract DEA attention). The four times a day dosing is annoying, but its worth it for me.
Oddly enough I find this much stronger than either 600mg/day of morphine or two 100 mcg/hr fentanyl patches. Everyone has a different cross-tolerance and metabolism for meds though. This is why I am so interested in what the DNA testing will show. Then for breakthrough I take 24mg of hydromorphone (three 8mg pills), once a day if needed. I was previously on 60mg of oxycodone (two 30mg pills) for breakthrough. Oxycodone was my go-to med for much of my 7.5 year pain journey.
Methadone also has the advantage that for most folks it doesn't raise your tolerance as fast. I was initially titrated up to 60mg/day (30mg twice a day). That was sufficient for a couple years (at least compared to the zero relief I got previously!). My primary doctor wouldn't go higher than that dose, and taking less than that at a time to try to split it into the four doses a day I needed wasn't helpful. I was stuck there for awhile until I finally found a good pain specialist.
I had thought that for sure I would do better on a different med, as I hadn't tried anything else long acting (but had tried all but fentanyl short acting). Exalgo wasn't out yet, and we figured out I didn't tolerate Nucynta, and I knew my Opana tolerance was ridiculous (at one time my primary doctor gave me 60mg at a time to take...six of the 10mg pills).
That left morphine and fentanyl patches to try. I was miserable on both, and actually in withdrawal at times. We went back to the methadone, but at 30mg four times a day. I've been doing well every since, about a year. Actually better the last couple months for no apparent reason. Hopefully this essay was helpful for someone. Best wishes.
constant headache since 2006
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Like Tortoisegirl, methadone was a life saver for me. I had run the whole line of pain meds from SA at very beginning to the fentanyl patches. I actually really like the patches, but an allergy to the adhesive caused it to start eating into my muscle. I had these square sores all around my torso. Funny looking, but not funny, ya know?
Anyway, after all that my doc suggested that I try the methadone. Fortunately, I have been on this pain journey long enough that I could care less about the "stigma" attached. I had heard some good things and I am always willing to try something different.
I take 160 mgs of methadone per day. I have been on this dose for almost three years and there are no indications that I will need an increase anytime soon. In a lot of ways, this particular pain med gave me back a good portion of my life. I still can't do tons of things, but I am able to do what I feel I need to do on a daily basis. I can go out and enjoy myself without having to worry that I'll need to leave early or have to go lie down. I have some quality of life back and that is so important.
I had some of the same side effects at first, but between time and a tweaking of when I take my doses, they didn't last very long.
For myself, I rarely need my breakthrough meds anymore. My pain stays at a pretty steady 4, which for me is amazing! However, like everyone else, I do have spikes in pain which do require bt meds. I use oxycodone 15mg up to 4 times per day. It works fine and again with minimum of side effects.
Hope this helps. Take care.
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Thanks for sharing Lotty. I too had the adhesive marking (and itching) issue with the patches, in addition to it just plain not working at the dose we tried. I hope we get some answers as to why none of the other meds besides methadone seem to be helpful anymore.
My best guess is my tolerance to them is just very very high in comparison to the methadone. I find it interesting you are on a higher methadone dose than me but (I assume) find some relief from 15mg oxycodone, as I was taking 60mg at a time with little effect.
I wish I had a reliably effective breakthrough med, but at least I haven't felt the need for it much, and I can try some other meds for acute pain too. Sometimes my headache responds to Triptans for migraine, plus I have some Toradol nasal spray which I always forget to / can't use since its in the fridge at home. If I don't take my breakthrough med very often (more like 1-2 times a week instead of once a day), it has a better chance of working.
How many times a day do you take the methadone, and do you split the doses evenly? So glad you are doing relatively well! Best wishes.
Hi Kate. Yeah, it was a roller coaster finding a med that would work and that I wouldn't need increased as quickly as with some of the others.
I take 40 mgs 4 times per day. I had to tweak the amount and times when I first started on it, because I kept nodding off when I was watching TV and stuff. But now that it's built up in my system, the side effects for me are minimal.
One thing I do really hate is that the highest dose available is the 10mg tablet. When I first started on this dose I had a hard time getting the pharmacist where I had been going for about 4 yrs to keep the quantity I needed in stock. They got kinda snotty with me about the dosage I was on and I ended up taking my business where I wouldn't be judged for the type or dosage of medication I am taking. No problems since then.
As far as the breakthrough goes, I hardly ever have to take mine anymore. If I do use it, it is usually in the middle of the night when I've been awoken by horrid pain. I mean once or twice a week at most and I never use the daily quantity I am allowed. Maybe that is why a lower dose works for me? Or maybe the oxy isn't a good bt med for you? Just guess here....
I am so glad to hear that others are having some success with methadone as well. Take care all!
I am really, really looking forward to hearing what this test has to say for you. Please let me know. Thanks!